Alopecia World
www.alopeciaworld.com
Xeljanz (Tofacitinib Citrate): My experience on the trial
I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.
I thought it would be nice for everyone if I documented my progress on here.
Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.
The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results.
I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.
-----------------------------
AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
-
Permalink Reply by FreakSince13 on
-
I've been following this thread quite a bit, silently, and after looking at the cost of the medication (~$25000/year), I have one question. Are all the people here, who are able to get the treatment, multi-millionaires?
I make a fraction of this, a year, and I wouldn't consider myself poor. How anyone, that isn't extremely rich, is able to afford the treatment is truly beyond me.
-
-
we are not millionaires... but for many of us this disease DESTROYED our life...
yes I know the bald is beautiful bla bla bla...
so yes in a sort of way it is life threatening because you don't have the same life anymore.
some people started the medication and tried to reduce dosage to save $. at least in the US they have Co-pay. In canada I am not even able to get co-pay. it is full out of pocket.
one way or another, we try to find the money...
-
-
This astounds me also. I think a lot of people are benefiting from the copay card or manufacturers hardship program.
But when you think about the raw numbers it is crazy. The median income in USA is $51k, after tax you're left with maybe 40k? For someone taking 10mg daily the MSRP cost is $41k/year! And it appears to be an ongoing treatment too, not a cure. To be saddled with that kind of expenses is devastating.
The willingness to endure this huge cost speaks to the effect that this disease has on people and the incredible lengths they are willing to go to do overcome it.
The hope must be to ride it out until the cost is lowered, insurance companies begin to pay for it, or a better solution comes up.
-
-
I do understand when you say it destroyed your life, seeing as how my 14 year struggle with AU brought me here. Bald may be beautiful, maybe. But not bald and eyebrow-less and eyelash-less. That's just creepy and weird.
While I don't see me getting this treatment in my lifetime, the chances for future sufferers looks relatively brighter.
I've heard from some people that medicare in Canada is cheap/free. Those guys clearly didn't know what they were talking about.
Still, good luck, hope it works out for you.
I will say this though. If this treatment becomes affordable when I'm 60(hopefully I won't live that long), I will get it, just to try and remember what it feels like to be normal again.
-
-
medicare and drugs in canada are cheaper, but not free. A lot of people have private insurance through their employer to cover the cost of drugs. But since alopecia relief is an offlabel (not approved by manufacturer) use of Xeljanz no insurance company (or the government medicare) will pay for it.
With enough trials and testing we might get to a point where insurance companies will cover it
-
-
Hope that happens.
But I keep my expectations really low. That way there wouldn't be too much of a disappointment.
-
-
best of luck to all of us. we didn't deserve this.
i believe nobody understand what we have been through. there is a special link between all of us alopecians. only another alopecian know my feeling. but in real life i find the topic so taboo...
and u nailed it when u said what it feels to be normal again.
-
Permalink Reply by Xeljanzmiracle on
-
Pfizer has a Hardship Program that lets U.S. cutizens get Xeljanz for FREE. To get info about it read my discussion titled "From Totally Bald to Regrowth in One Month". It will tell you how to apply for the program. Or call Xelsource.
-
-
Thank you very much for that information.
Unfortunately for me, I'm not a citizen of the U.S.
I did read through a lot of this thread and, consequently, about your results, congrats on that :)
-
-
Thank you. Just took update picture below today. Where do you live? Some people from other countries have applied for the co-pay card and come to the U.S. to pick up a 4 month supply ($12,000) for free.
-
-
Forgot picture, lol!
- Attachments:
-
-
IMG_20160310_131923.jpg, 404 KB
-
-
-
It's c
© 2024 Created by Alopecia World.
Powered by
